Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

The Next Step

Meet Blair:

My name is Blair and am 20 years old. I’m from the US and was diagnosed with UC four years ago in 2008. I love playing sports, specifically soccer and lacrosse! I love singing, playing my guitar and the piano. I attend a university for linguistics. Learning new languages is a passion of mine; I speak Spanish and French very well, and am still learning Russian, German and Italian.

My Symptoms:

Currently I have constant and frequent diarrhea and am anemic. Occasionally I’ll have stomach pain.

Blair’s Colitis Story:

In 2008, when I was 16, I was diagnosed with Crohn’s Disease and Primary Sclerosing Colangitis. I switched doctors about two months later and he changed the diagnosis from Crohn’s to UC. Since before I was even diagnosed I have had horrible stomach pain everyday that only recently subsided. I would get spells where I would have a fever, be freezing, shivering nonstop, and eventually throw up. My labs aren’t too bad. They were way worse when I was first diagnosed, then were completely normal, and then all of a sudden I got this flare. Right now my labs just show inflammation and anemia. It wasn’t until about seven months months ago that I started having blood in my stool and was having diarrhea everyday uncontrollably. I have tried medicine after medicine, have had allergic reactions or the medicine just hasn’t worked. Since I’ve been on a flare-up for seven months and on Prednisone for that long, my doctor thinks it’s time for the next step: infusions. He doesn’t want me on Prednisone any longer due to long-term consequences. I am also on Apriso and Azathioprine. I had an allergic reaction to Pentasa which is the same type of medicine as Apriso, so I’m thinking the reason I’m not getting any better is because I’m taking Apriso. Before I agree to these infusions I am finally starting a strict diet, going to stop Apriso and see if that helps.

I would like to know what treatments others have used.

What’s the longest anyone has been on Prednisone?

Is there any other option after the steroids besides infusions and surgery?

Does anyone have any insight on infusions?

I don’t know much about biologics except that they are expensive and have a lot of potential consequences such as Hepatitis and Cancer. I really don’t want to do these infusions. I’m willing to try anything which is why I’m on board with the change in diet. How long are flare-ups usually? Is my doctor right to be worried or could this last a year and then get better? It’s my first flare. Has anyone had luck with Probiotics? I know everyone is different, but what are some experiences with non-medicinal treatment? My family is helping me do research and are completely supportive in every way. They will help create meals I can eat, help pay for insurance and bills and do more research than I do. What we are most concerned about is stopping the pills and starting the infusions. If it was the best option I would consider it, I just feel like switching to that after only seven months is premature. Any help/feedback/advice would be greatly appreciated!

Where I’d like to be in 1 year:

In a year I would love to be symptom-free, taking medication, and on a healthy diet. I would like to be doing blood tests and seeing my doctor every three months instead of every month. I would love to either be promoted in my current job or have a job with an airline. I would love to be traveling and just enjoying life!

Colitis Medications I’m Using/Used:

Azathioprine: Works great! I have had no problem with side effects, and my labs look great and I fell well when I’m on it.
Prednisone: Worked well, allows me to go throughout the day without worrying about going to the bathroom every 20 minutes. However I have had several side effects such as weight gain, acne..
Endocort: Didn’t work for me, no side effects.
Pentasa: Had an allergic reaction of bloody diarrhea.
Apriso: Doesn’t do much for me, could possibly be making me worse and causing diarrhea.

written by Blair

submitted in the colitis venting area




Primary Sclerosing Colangitis, Remicade

5 Responses to The Next Step

  1. Adam
    Adam July 26, 2012 at 6:36 am #

    Dear Blair,

    Thank you so much for sharing our story. First off, you’re truly amazing for being able to speak Spanish & English, I’m pretty good at the old Espanol myself, but French too…haha… How the heck you can pull off those vowel sounds I’ll never understand. And Russian and German too…come one…Thta’s incredible!! When you gonna get on the Chinese train???

    OK, as for some of your questions. I think you’d benefit alot from reading several of the surveys that we have conducted here on ihaveuc in the past.

    Specifically, there is a Remicade survey. It was created with 35 different UC’ers who have taken Remicade infusions to treat their UC. Here’s the link to that: http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    Also, there is a survey that 129 people took and participated in who have taken/take probiotics for their colitis. Here’s the link for that: http://www.ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/

    Give those a read, and I suspect you’ll get alot of your questions answered.

    I wish you the very best, and thanks so much for joining our site.
    -Adam

  2. Lara
    Lara July 26, 2012 at 8:07 am #

    I get Remicade infusions every 8 weeks. I was diagnosed with UC last year & nothing worked: IV steroids, oral medications, etc. Once I started on the infusions it made a HUGE difference in my life. All for the better.

    They are very expensive, so check to see what your insurance will cover. Also, the only side effects I notice are that I get really cold, tired, & hungry. Usually I’ll go home afterwards & take a nap.

    I did just have a colonoscopy a few days ago & it showed SIGNIFICANT improvement from last year. Only the lower portion of my colon is now really affected (not like last year when it was the entire thing). So I’m really glad that my doctor & I have found something that’s working for me. :)

    I suggest you talk to your doctor(s) & get more information. You can also look online, but be careful of the sites because anyone can put anything online now. Hope you feel better soon!!

  3. Jessica July 26, 2012 at 8:32 am #

    I have started remicade and I had my second infusion last week. So far this has been a miracle drug for me. I have had UC for about 4 years now, initially I healed on the SCD diet and was in remission for 16 months.

    When I started adding illegal foods back in I went through a very rough 4 month flare that would not let up with diet or medication. Finally I was so desperate I agreed to remicade, even though I was very hesitant.

    Try the SCD and see if it works with you.
    Although remicade should be a last resort, it does work!

  4. Bev July 26, 2012 at 1:41 pm #

    I have something to say!!

    Please try a good 50 billion strain probitic for at least two months. It just may surprise you! You may feel so good, you won’t need OR WANT to try any more meds!

    Also, add L-glutamine and astaxanthin daily. All three things will only run you about $50 per month! The first one heals your colon, the other is a natual anti-inflammatory, which it sounds like you need.

    I have pancolitis, and tried alot of drugs to attain remission. It never happened for me. When I went natural (these three things), I got relief and remission!!

    Totally!! Just try it. It can’t and won’t hurtyou to give them a whirl.

    Cheers,
    Bev:)

  5. Justin
    Justin July 28, 2012 at 10:32 am #

    Hey Blair! I am currently in the hospital now and am about to start the remicade tomorrow. I was diagnosed last month and was put prednisone which at first worked great but after about a month the symptoms came back worse then ever. They said I’ve developed toxic megacolon so they are trying to get that under control now while the colon is still saveable. But its either remicade or surgery for me at this point. They are just checking my insurance to make sure that its covered. I was on probiotics before I was in the hospital and they really helped. Made thing soooo much easier to digest. I would definitely get a very high bacteria count version though like Bev said. I hope you get to feeling better soon!

Leave a Reply